PANS and PANDAS

I beg to move,

That this House has considered PANS and PANDAS.

It is a pleasure to serve under your chairpersonship, Mr Dowd. I will refer to paediatric acute-onset neuro- psychiatric syndrome—PANS—and paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections—PANDAS—as PANS/PANDAS throughout. Before I begin my speech, I welcome members of the all-party parliamentary group on PANS and PANDAS who are here and those Members who supported the Backbench Business debate application that brought us here. Most importantly, I welcome representatives from PANS PANDAS UK and medical specialists who are here to watch the debate; they will be available to meet MPs in room W3 afterwards.

I acknowledge that there may well be a significant variation in knowledge of the conditions PANS/PANDAS in the room. On the one hand, we are joined by experts and many MPs, including me, who know a little or something about the condition through our casework and campaigning, but I would not be surprised, Mr Dowd, if you did not know what we are here to discuss. The reason that that would not surprise me is because it is also the reason that we are here today: despite becoming increasingly widespread among children and young people, there is little awareness of or treatment for PANS/PANDAS. I hope that colleagues will bear with me if I briefly set out what PANS/PANDAS are.

I congratulate the hon. Lady on securing this debate. She mentioned that awareness is crucial. A family in my constituency of Merthyr Tydfil and Rhymney has been living through what has been described as a living hell—it is a really heartbreaking story—since their daughter first had symptoms back in January. Awareness is low across the country, including in the medical profession in, and the APPG will undoubtedly help with that. I am sure that we are all rallying to raise awareness and support and get awareness out there across the country.

A “living hell” is certainly how it has been described to me in conversations that I have had, not only because of the symptoms themselves and dealing with them, but because of the lack of support compounding that distress.

I will outline what PANS/PANDAS are. PANS is a condition in children and young people that can result from an initial mild infection such as chickenpox or covid. PANDAS is a specific sort of PANS that stems from strep. While the initial infection might be mild, in some cases it triggers a misdirected immune response and/or a brain inflammation that causes the rapid onset of severe symptoms, which can include obsessive compulsive disorder, tics, severely restricted food intake, anxiety, aggression, depression, memory deficiency, poor cognitive function and behavioural and developmental regression. These changes can and do take place literally overnight. Understandably, the impact of those symptoms on a child and their family is monumental. We do not need to be parents ourselves, although many of us here may be, to understand how utterly distressing it must be to have a formerly healthy, happy child suddenly find themselves unable to leave their bedroom, dress, eat, wash, talk to others or attend school and to see them vanish as the illness takes over. Sadly, that distress is compounded and worsened many times over by the lack of available support for patients and their families, as PANS is often not even suggested, considered or acknowledged.

Globally, PANS/PANDAS are recognised and treatment pathways have been set up. The World Health Organisation has explicitly acknowledged the conditions in its latest guidance. However, as things stand, there is neither NHS nor National Institute for Health and Care Excellence guidance on the diagnosis or treatment of PANS/PANDAS in any part of the UK. That leaves patients subject to an unfair and arbitrary lottery. All the evidence suggests that the best treatment is early diagnosis and a two-week course of antibiotics. If that window is missed, antibiotics may become less effective and other treatments are needed.

I am grateful to the hon. Member for securing the debate. I wonder whether they agree that clinical evidence and lived experience across the whole of the UK must inform the evidence base that clinicians and NICE make, and that that must be based on the reality experienced by our constituents who are suffering from PANS/PANDAS. Through this debate, I hope the hon. Member will be able to force that through not just to Ministers, but to the civil servants who are advising them and the clinicians who say that this condition does not exist.